Inside today's data-driven personalized medicine, and the time, effort, and information required from patients to make it a reality
Medicine has been personal long before the concept of “personalized medicine” became popular. Health professionals have always taken into consideration the individual characteristics of their patients when diagnosing, and treating them. Patients have cared for themselves and for each other, contributed to medical research, and advocated for new treatments. Given this history, why has the notion of personalized medicine gained so much traction at the beginning of the new millennium?
Personalized Medicine investigates the recent movement for patients’ involvement in how they are treated, diagnosed, and medicated; a movement that accompanies the increasingly popular idea that people should be proactive, well-informed participants in their own healthcare.
While it is often the case that participatory practices in medicine are celebrated as instances of patient empowerment or, alternatively, are dismissed as cases of patient exploitation, Barbara Prainsack challenges these views to illustrate how personalized medicine can give rise to a technology-focused individualism, yet also present new opportunities to strengthen solidarity. Facing the future, this book reveals how medicine informed by digital, quantified, and computable information is already changing the personalization movement, providing a contemporary twist on how medical symptoms or ailments are shared and discussed in society.
Bringing together empirical work and critical scholarship from medicine, public health, data governance, bioethics, and digital sociology, Personalized Medicine analyzes the challenges of personalization driven by patient work and data. This compelling volume proposes an understanding that uses novel technological practices to foreground the needs and interests of patients, instead of being ruled by them.
“It is apparent from what Prainsack writes elsewhere in her clear and powerful analysis that we need to attend to these mushrooming responsibilities for being engaged and empowered with and by our data and how social and economic inequalities differentiate who is able or required to enact these responsibilities and benefit from the choices that they invoke…Prainsack provides us with an invaluable guide to set us off in the right direction along this path.”-New Genetics and Society
“Prainsack accessibly unpacks the
complexities of ‘patient-centered personalized medicine,’ revealing startling
redistributions of responsibility, diagnostic capacities, costs and profits.
Providers lose autonomy as ‘algorhythmically supported’ diagnoses and care
based on ‘health maps’ displace clinical judgement. Patients awash in
information are increasingly responsible, and high costs make such care
impossible for most. Prainsack envisions a personalized medicine for all the people, not for profit.”-Adele E. Clarke,Co-author of Biomedicalization
"Prainsack’s rigorous review and synthesis of evidence on [patient] engagement from the fields of medicine, ethics, social science, technology, informatics, and law is quite compelling and makes this book a unique contribution."-Health Affairs
“Barbara Prainsack raises deep questions
about the ethics and politics of personalized medicine. In this rigorous and
engaging book, she explores the cutting edge of health care, critiques several
popular visions of patient empowerment, and offers a novel and compelling account
of what truly democratic, responsive, and fair deployment of new health
technologies would require. Displaying a mastery of diverse literatures in
social science, law, and health services research, Personalized Medicine is a must-read for anyone interested in the
future of patient participation in health and wellness initiatives—ranging from
self-tracking to biohacking, and well beyond.”-Frank Pasquale,Author of The Black Box Society: The Secret Algorithms that Control Money and Information
"A thoughtful, thorough, and philosophical discussion of the many possible obstacles to the successful, equitable implementation of personalized medicine and its potential for unintended consequences."-Genome Magazine